I have been told by Dr's for past 5 years that I have anxiety and I know that is not the answer. I do think that I have had Celiac for many many years and no one has even given it i thought that it could be Celiac until my gastroenterologist did the test and it came back positive. I have also had chronic hives for years (34) and I think this has something to do with celiac also. Don't know how much damage has been done but hope some of it can be repaired or stopped from progressing. Had all of the neuro. testing including a brain scan and all os ok. I do get buzzing numbness in my legs and feet and also have a vibrating feeling in my chest. Feel it mostly when I am very quiet at night in bed. Had all cardio testing done also and everything is fine except for a slight leaking tri-cuspid valve which they say is not the cause of the problems.

Hope to hear from anyone else that has neuro symptoms. Live alone and it scarey. Today I am getting rid of everything in the house that has wheat and gluten in it.

I have been told by Dr's for past 5 years that I have anxiety and I know that is not the answer. I do think that I have had Celiac for many many years and no one has even given it i thought that it could be Celiac until my gastroenterologist did the test and it came back positive. I have also had chronic hives for years (34) and I think this has something to do with celiac also. Don't know how much damage has been done but hope some of it can be repaired or stopped from progressing. Had all of the neuro. testing including a brain scan and all os ok. I do get buzzing numbness in my legs and feet and also have a vibrating feeling in my chest. Feel it mostly when I am very quiet at night in bed. Had all cardio testing done also and everything is fine except for a slight leaking tri-cuspid valve which they say is not the cause of the problems.

Hope to hear from anyone else that has neuro symptoms. Live alone and it scarey. Today I am getting rid of everything in the house that has wheat and gluten in it.

Nan

Nan,

I am sure it can be scary when you're alone.

I have recently developed some slight numbness from my shins down and some tingling sensations in my thighs. And on a few rare occasions that sharp jab in some of my joints. My left entire arm shakes, sometimes worse than others. Not quite sure what it's about yet, but I will be checking with my doctor in a few weeks.

Thank you all for your replys. Now I don't feel so all by myself with this. Dr's have been kind of ignoring me for years and saying it's my nerves. I am not a nervous person in general. I am now just diagnosed and starting to go wheat and gluten free. Have lost some of the feeling im ny toes at this point and don't know if nerves can regenerate themselves but my trash can is full of stuff and anything unopened will go to my daughter-in-law and be used. At least maybe it wont get any worse.

Not getting a good nights sleep due to the tingling is also a problem and that is making me nervous as it is kind of tingling all over.My husband passed from cancer 6 years ago and I kind of feel all alone with this. Now I at least know others have the same symptoms. Funny thing is I have never had intestinal problems with it. BUt the test is positive for it.

Is there anyone on the board with Celiac that have neurological symptoms? Neuropathy?Thanks.Nan

I have neuropathy in my right siatic nerve running down my right leg. Painful, hurts to move but it is much better since going gluten-free but if i get glutened it comes right back. Yesterday went to beauty salon and asked them to use only water, my beautician said she had wheat allergies and recommended matrix silk said didnt have gluten. woke up this morning, vomiting, aches, sweating, and that d**n nerve pain, also hives, DH I will never do that again.

Yes, there are many of us. The weekends are generally slow around here. I am sure that others will post soon.

I had balance issues, speech issues and the fog is not totally lifted. Much has subsided since being gluten free for two years. Some issues I have yet to resolve.

What were your speech issues? Did you have trouble with kind of scrambling up your words sometimes? That's what I have. I also stumble very easily, sometimes when there is nothing there to trip over, and am basically very uncoordinated. (Of course, I may just be a klutz.)

I have greatly diminshed the fog, fear and depression since largely gluten-free. When I get poisoned it all comes back. I also used to have what I term mis-fires which I get these paranoid, often violent thoughts while thinking about otherwise benign situations or talking calmly with even a sweet person. I thought I was possesed by the devil but it was just bad protein.

I have greatly diminshed the fog, fear and depression since largely gluten-free. When I get poisoned it all comes back. I also used to have what I term mis-fires which I get these paranoid, often violent thoughts while thinking about otherwise benign situations or talking calmly with even a sweet person. I thought I was possesed by the devil but it was just bad protein.

I also have Celiac and neuro symptoms. You are not alone! I had "panic attacks", severe depression (I would come home, lay on the floor and bawl, trying to come to terms with the fact that I had to kill myself ), troublle walking, talking, and keeping my balance. I also had neuropathy like pains. I had back spasms and bone pain, and although these aren't neuro symptoms, they did cause me to have trouble walking as well. I was as sick as a dog.

The good news? All of that resolved on the gluten-free diet. I thought I had MS or diabetic neuropathy for sure. I still get many of these symptoms when glutened, although most usually are not as severe and I don't get them all all at once.

Some studes have found that some Celiacs have nerve autoantibodies that seem seperate from Celiac Disease and do NOT disappear on the gluten-free diet. Other people have neuro damage from vitamin deficiencies that does clear with vitamin supplements and the gluten-free diet.

You might want to make sure you do not have an nutrient deficiencies if you have neuro symptoms that remain despite the diet. Just know that you are not alone!

Note: If anyone has neuro symptoms that do NOT improve on the gluten-free diet or GET WORSE, please make sure you ask your doctor to screen you for other conditions in addition to vitamin deficiencies. Conditions like MS are more common in those with Celiac.

Is there anyone on the board with Celiac that have neurological symptoms? Neuropathy?Thanks.Nan

I do. I don't have an official Celiac diagnosis, but I have an IgE allergy to wheat and rye and I have neurological symptoms when I eat gluten. My DD is confirmed gluten sensitive. She has neurological symptoms as well. Due to my neurological symptoms to gluten, I am going to take this as a confirmation of gluten sensitivity, in addition to an IgE allergy - so no gluten for me, even without an "official" diagnosis. I have asthma, so when I eat gluten I have trouble breathing, so that alone is enough to keep me off gluten - but when you add in the neurological symtoms, it's definitely a confirmation for me.

My DD's are (she's only 3) - diminished response to pain, a worsening of her speech delay, acting "drunk", loss of coordination and balance.

We also both have GI symptoms as well, but we both definitely have neurological symptoms. She actually has diagnosed neurological developmental delays - don't know if they are specifically caused by gluten sensitivity or if they are "enhanced" by gluten, but they are greatly diminished when she's off the "evil grain".